Hello all. I feel like I haven't posted in so long that I need to reintroduce myself. It's crazy to think that we used to update this thing multiple times a day. There is no way we could do that now. It's amazing to me that two children are three times the work. Not complaining...just an observation. We are crazy busy around here but its an awesome feeling.
We've had a pretty good weekend here. Reed and I ran some errands yesterday morning which included getting him a haircut and picking up a couple of Christmas presents. I know...it's barely October. I just like to shop early so that when the actual Christmas season rolls around, I can enjoy it. Anyway...we pretty much just watched football and hung around the house yesterday afternoon. Beau and Reed went to church this morning and the zoo this afternoon. Gaines and I have been spending a lot of good quality time together today. He is cat-napping now.
Let's see...the Gaines update. The doctor has changed Gaines' medicine from Zantac to Nexium but it doesn't seem to be working so hot either. He still spits up like crazy...but the medicine should be making it less painful for him (think about all that stomach acid coming up). He has that swallowing study tomorrow so hopefully that will go well. I'm not exactly sure what we are looking for there but pray for favorable results. About the spitting up...someone asked about changing his formula. I've been wondering that myself as well. All I can figure is that he needs to be on this formula he's on. I'm pretty sure its for preemies but even though he's past that stage, he still needs all the extra stuff that's in it. I think to give him extra nutrition because of his lungs but also to replace some of what the diuretics take out (remember he's still on 3 of those).
Went off on a tangent there, sorry. Gaines got weighed at the pediatrician's office Friday and it was another perfect weight. Thank goodness for that or I'd really be stressing about this spitting up business. Developmentally he seems to be doing well too. Every time he goes to physical therapy I learn a little more about what he should be doing. Right now we do stretches to stretch his hamstrings and ankles...I guess that would be Achilles?...and try to get him to use his front neck muscles. We also do things like put him on his side and let him try to play with a toy in front of him with his top hand. There's just all kind of things. His physical therapist is great and the good news is that we will see her through Early Intervention as well...as soon as that gets set up. It seems to take a little while.
Gaines is growing and doing great and I am beyond thankful for him and how far he has come. I've been thinking a lot lately about that. I remember his first day here when the NICU doctor came and got us from my post partum room because Gaines was not doing well. We sat in that NICU clinging to each other as we watched a team of doctors and nurses work on him. We watched the numbers on his monitor drop and our hearts sank as the nurse asked if we wanted a chaplain to baptize him. That was a hard day and there were many other very hard days...that seems like the understatement of the year...but look at where he is now. God is so good.
So now, as I continue to pray for Gaines' complete healing, I know in the back of my mind that it would be a miracle for him to come out of this with no lingering effects but I also know that him laying in my floor sleeping sweetly right now is a miracle and I know that they do happen and I know what an awesome thing prayer is.
Please continue to keep Gaines in your prayers. Pray that his little lungs will be healed and that he'll be up and running around with his brother very soon. Oh, and for safe travels tomorrow for his appointment and all the little babies out there fighting for healthy lungs.
Love to all,
Brittany
6 comments:
Does Gaines already have a GI doctor? (Our little one had 7 doctors for a while) Ask the doctor about possibly changing formulas. The extra calories are beneficial for preemies, but if he's spitting up he's not getting all the nutrition he needs anyways.
Good luck!
I was just wondering if about a GI doctor myself. The swallowing study can tell them a lot about his reflux and whether they need to thicken his formula to protect his lungs from the spit up coming up into his lungs. We will pray that the test goes well. Really, it isn't a very big deal. We have two girls with severe reflux and have been through the swallow test with both. The fact that Gaines is gaining weight so well is a good thing. We are meeting with a surgeon on Thursday to decide whether both of our girls are going to have surgery to fix their reflux. We could use your prayers.
I agree-check on the formula- our preemie was alergic to the neonate formula-caused serious reflux...and he was getting a small amount-he was given breast milk and the formula was added to it to fortify and give additional calories. I can only imagine the effect on poor Gaines if he's allergic. I know of other babies that had this issue-they were switched to regular formulas but added more scoops than directed on the can-I think it was 2 scoops per 3 oz water if I remember correctly.
good luck:-)
Ahhh yes, the reflux, spitting up, beginning PT..gosh, I remember those days. Nexium should help for sure so it doesn't burn the lining of his esophogus but those types of medicines won't help with the spitting up. Our pedi switched formulas since Ryan would throw up and it would come through his nose. We tried a couple different ones but ended up with Alimentum. When he saw the Pediatric GI, he had him stay on Alimentum since he was gaining weight. He still spit up but not as much. Good Luck at the appt. and just know that you still have lots of people praying for you all. I know I check here often, just don't get a chance to post.
God Bless,
Karen in Virginia
Brittany,
I'm so glad that things are settling into the normal "crazies" of everyday life for y'all!! I'll continue to pray for the swallow study (even though it's probably underway by now!) And, as much as I hate to admit it, I'm THRILLED that you CAN go 4 days without any major news! That's what we've all been praying for ultimately anyway!!
Thank you for continuing to update your blog! I'm so glad things are getting back to "normal" and that Gaines is doing so well. I pray that everything goes/went well with the swallow study today!
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